Family of Down's Syndrome man fight DNR order

Law firm Leigh Day & Co has begun legal action after a Do Not Resuscitate (DNR) order was put on the file of a 51 year old man with Down Syndrome.

13 September 2012

Law firm Leigh Day & Co has issued legal proceedings against an NHS Trust after a Do Not Resuscitate (DNR) order was put on the file of a 51 year old man with Down's Syndrome, without the knowledge of his next of kin, which instructed staff not to perform resuscitation in the event of a cardio or respiratory arrest, with no provision for review and giving his disability as the sole reason for its imposition.

The man known only as AWA, who cannot be named for legal reasons, is taking legal action against East Kent Hospitals University NHS Foundation Trust through what is known as a litigation friend who is representing the man. As the litigation friend is a family member he too cannot be identified.

On 7 September 2011 AWA, who suffers with dementia and is PEG fed which involves him being fed through a tube in his stomach, was admitted to Queen Elizabeth the Queen Mother Hospital in Margate, Kent where he remained until 26 September 2011.

Throughout his time at the hospital his family visited virtually every day and his parents attended a meeting, organised by clinicians caring for him, to discuss his feeding tube. In addition to his family a carer from AWA’s residential home was also present at the hospital on multiple occasions.

Following his final discharge back to the residential home, staff found the DNR in AWA’s possession. The DNR states: (a) It is “indefinite” in duration (b) The rationale for withholding resuscitation is that AWA had “Downs Syndrome, unable to swallow (PEG fed), bed bound, learning difficulties.” (c) No discussion with next of kin because they were “unavailable” (d) Is blank regarding the information leaflet.

None of AWA’s family or staff at the residential home had been made aware of the DNR order by the hospital on AWA’s discharge and indeed at any time prior to or after the implementation of the DNR.

The manager of AWA’s residential home contacted AWA’s Community Learning Disabilities Nurse who was so horrified at the DNR that she telephoned the Clinical Decision Unit at the hospital and challenged the Doctor about the order.

She then informed AWA’s family as she felt they needed to know, not least as AWA had been admitted back into hospital.

AWA’s family were shocked to learn about the imposition of the DNR, not only in light of the comments on the form itself but also the fact a decision to withhold potentially life sustaining treatment from AWA had been made with no consultation with the family, let alone their agreement.

AWA’s mother made a complaint, and although an acknowledgment that failing to have a discussion was wrong and “not expected”, apologies were offered from the Trust without any actual acknowledgment of any wrongdoing.

Merry Varney from the Human Rights team at Leigh Day & Co said:

“This is definitely one of the most extreme cases we have seen of a DNR order being not only imposed on a patient without consent or consultation, but to use Down's Syndrome and learning difficulties as a reason to withhold life-saving treatment is nothing short of blatant prejudice.

“If an individual was physically preventing a doctor from administering life-saving treatment to a disabled relative, it would undoubtedly be a matter for the police, yet we see doctors taking this decision without consent or consultation regularly.

“The absurdity of this is highlighted by the contrast with cases where people wish to end their own lives. “Any doctor assisting patients with capacity such as Tony Nicklinson or our own client ‘Martin’, who wish to end their own life would face prosecution for a serious criminal offence.”

Mr X the litigation friend for AWA said:

“We were all shocked to find out about what had been put into AWA’s notes without our knowledge. One member of the family at least was in the hospital practically every day and could have been consulted about the decision.

“We are bringing this action to highlight the issue and to make sure that something like this cannot happen to another loved son and brother”

Leigh Day & Co are also acting in another case that of Janet Tracey, which will be a full judicial review hearing expected in November 2012. The judicial review will challenge the particular Trust on its DNR policies as well as tackling the secretary of state for Health on the lack of a nationwide policy of when and how DNR orders are applied.